Personality and Self-efficacy for Illness Management in Cancer.

Objectives: Self-efficacy for illness management is increasingly recognized as important for outcomes in cancer. We examined whether The Big Five personality dimensions were associated with self-efficacy for illness management and hypothesized that patients who were less neurotic and more conscientious would have better self-efficacy. Methods: Adults with cancer completed a cross-sectional survey that included the Mini-International Personality Item Pool (IPIP) and three subscales of the Patient-Reported Outcomes Measurement Information System (PROMIS) Self-Efficacy for Chronic Conditions: managing emotions, managing symptoms, and managing treatment and medication. Linear regressions were used to test the hypotheses, while controlling for covariates. Results: The personality and PROMIS self-efficacy measures demonstrated good evidence of reliability (median Cronbach's alpha = .78, range of .69-.92) and validity (intercorrelations). As hypothesized, patients who were less neurotic or more conscientious had higher levels of illness self-efficacy overall and on each of the three subscales (all ps < .001). Openness was associated with better self-management of symptoms (p = .013) and emotions (p = .040). Extraversion was associated with better self-management of emotions (p = .024). Conclusions: Personality plays a vital role in illness self-efficacy for patients with cancer. Practice Implications: As a part of multidisciplinary care teams, psychosocial experts can use these findings to help patients better manage their illness.

Patient-Caregiver Dyads & End-of-Life Care: Caregiver Personality Disrupts Gender-Based Norms.

CONTEXT: Gender and personality may individually impact end-of-life care. Men often receive more aggressive treatments than women near death, and personality - particularly openness - may be associated with increased care utilization when it diverges from traditional treatment norms. However, research has not examined the interaction of these variables in a dyadic context. OBJECTIVES: This study examined the dyadic effects of patient gender and caregiver personality on end-of-life care. METHODS: Using data from the VOICE randomized clinical trial, the present sample consisted of patient-caregiver dyads receiving outpatient care for advanced cancer in Sacramento and Western New York. Analyses assessed whether caregiver personality was associated with gender-based differences in patient chemotherapy or emergency department/inpatient visits in the 30 days before death. Logistic regression examined the interaction between caregivers' Big Five personality dimensions and patient gender while accounting for patient and caregiver demographic and health characteristics. RESULTS: Of a total of 134 patient-caregiver dyads, 19.4% (n = 26) of patients received chemotherapy and 47.8% (n = 64) had an emergency department/inpatient visit in the 30 days before death. Results demonstrated a significant interaction between caregiver openness and patient gender on receipt of chemotherapy (odds ratio = 0.07, p = 0.006). When caregivers were less open, men were more likely to receive chemotherapy near death, whereas when caregivers were more open, women were more likely to receive chemotherapy near death. CONCLUSION: Results suggest caregiver personality characteristics, particularly openness, might disrupt gender-based treatment norms at end-of-life. Findings demonstrate that patient and caregiver factors can interact to explain patient healthcare utilization.

Cultivating community-based participatory research (CBPR) to respond to the COVID-19 pandemic: an illustrative example of partnership and topic prioritization in the food services industry.

BACKGROUND: As an illustrative example of COVID-19 pandemic community-based participatory research (CBPR), we describe a community-academic partnership to prioritize future research most important to people experiencing high occupational exposure to COVID-19 - food service workers. Food service workers face key challenges surrounding (1) health and safety precautions, (2) stress and mental health, and (3) the long-term pandemic impact. METHOD: Using CBPR methodologies, academic scientists partnered with community stakeholders to develop the research aims, methods, and measures, and interpret and disseminate results. We conducted a survey, three focus groups, and a rapid qualitative assessment to understand the three areas of concern and prioritize future research. RESULTS: The survey showed that food service employers mainly supported basic droplet protections (soap, hand sanitizer, gloves), rather than comprehensive airborne protections (high-quality masks, air quality monitoring, air cleaning). Food service workers faced challenging decisions surrounding isolation, quarantine, testing, masking, vaccines, and in-home transmission, described anxiety, depression, and substance use as top mental health concerns, and described long-term physical and financial concerns. Focus groups provided qualitative examples of concerns experienced by food service workers and narrowed topic prioritization. The rapid qualitative assessment identified key needs and opportunities, with help reducing in-home COVID-19 transmission identified as a top priority. COVID-19 mitigation scientists offered recommendations for reducing in-home transmission. CONCLUSIONS: The COVID-19 pandemic has forced food service workers to experience complex decisions about health and safety, stress and mental health concerns, and longer-term concerns. Challenging health decisions included attempting to avoid an airborne infectious illness when employers were mainly only concerned with droplet precautions and trying to decide protocols for testing and isolation without clear guidance, free tests, or paid sick leave. Key mental health concerns were anxiety, depression, and substance use. Longer-term challenges included Long COVID, lack of mental healthcare access, and financial instability. Food service workers suggest the need for more research aimed at reducing in-home COVID-19 transmission and supporting long-term mental health, physical health, and financial concerns. This research provides an illustrative example of how to cultivate community-based partnerships to respond to immediate and critical issues affecting populations most burdened by public health crises.

Emotional distress predicts palliative cancer care attitudes: The unique role of anger.

OBJECTIVE: Although palliative care can mitigate emotional distress, distressed patients may be less likely to engage in timely palliative care. This study aims to investigate the role of emotional distress in palliative care avoidance by examining the associations of anger, anxiety, and depression with palliative care attitudes. METHODS: Patients (N = 454) with heterogeneous cancer diagnoses completed an online survey on emotional distress and palliative care attitudes. Emotional distress was measured using the Patient-Reported Outcomes Measurement Information System anger, anxiety, and depression scales. The Palliative Care Attitudes Scale was used to measure palliative care attitudes. Regression models tested the impact of a composite emotional distress score calculated from all three symptom measures, as well as individual anger, anxiety, and depression scores, on palliative care attitudes. All models controlled for relevant demographic and clinical covariates. RESULTS: Regression results revealed that patients who were more emotionally distressed had less favorable attitudes toward palliative care (p < 0.001). In particular, patients who were angrier had less favorable attitudes toward palliative care (p = 0.013) while accounting for depression, anxiety, and covariates. Across analyses, women had more favorable attitudes toward palliative care than men, especially with regard to beliefs about palliative care effectiveness. CONCLUSIONS: Anger is a key element of emotional distress and may lead patients to be more reluctant toward timely utilization of palliative care. Although psycho-oncology studies routinely assess depression or anxiety, more attention to anger is warranted. More research is needed on how best to address anger and increase timely utilization of palliative cancer care.

Top Ten Tips Palliative Care Clinicians Should Know About Behavioral Pain Management for Persistent Pain.

Seriously ill patients often experience persistent pain. As a part of a comprehensive repertoire of pain interventions, palliative care clinicians can help by using behavioral pain management. Behavioral pain management refers to evidence-based psychosocial interventions to reduce pain intensity and enhance functional outcomes and quality of life. Conceptualized using the biopsychosocial model, techniques involve promoting helpful behaviors (e.g., activity pacing, stretching, and relaxation exercises) and modifying underlying patterns of thinking, feeling, and communicating that can exacerbate pain. The authors have expertise in pain management, clinical health psychology, geropsychology, behavioral science, and palliative medicine. The article reviews the current evidence for behavioral interventions for persistent pain and provides 10 recommendations for behavioral pain management.

Palliative Care TikTok: Describing the Landscape and Explaining Social Media Engagement.

Background: Although palliative care programs are beneficial to patients and families, most of the public is unfamiliar with and underutilizes palliative services. TikTok, a fast-growing social media platform worldwide, allows users to share short live-recorded videos and could be used to educate the public about palliative care. Objective: This study characterized palliative care TikTok videos and determined characteristics associated with higher user engagement metrics (views, likes, comments, and shares). Methods: The investigators analyzed the content and engagement metrics of palliative care TikTok videos. Each video was coded for author type (health care professional, patient, caregiver, or other) and demographics, features, and themes. Negative binomial regression analyses identified whether author type and themes were associated with engagement statistics. Results: After screening 510 videos, 146 met criteria for analysis. The most prominent author types were health care professionals (55.5%), followed by patients (32.9%) and caregivers (7.5%). Authors were often female (71.2%) and played music (59.5%) while talking (45.9%). Themes were describing personal experiences (47.3%), educating (39.7%), addressing misconceptions (16.4%), responding to questions and comments (14.4%), and raising awareness (11.0%). Caregivers' videos were most likely to be viewed (p = 0.003) and liked (p < 0.001), whereas health care professionals' videos were most frequently shared (p = 0.01). Engagement was highest among videos describing personal experiences (views: p < 0.001, likes: p = 0.002, shares: p = 0.003) and educating (views: p = 0.005, likes: p = 0.002, comments: p = 0.02, shares: p < 0.001). Conclusion: TikTok provides an interactive platform for patients, professionals, and caregivers to share information and experiences about palliative care, making it potentially valuable for explaining palliative care to the public.

Application of Terror Management Theory to End-Of-Life Care Decision-Making: A Narrative Literature Review.

Patients with serious illnesses often do not engage in discussions about end-of-life care decision-making, or do so reluctantly. These discussions can be useful in facilitating advance care planning and connecting patients to services such as palliative care that improve quality of life. Terror Management Theory, a social psychology theory stating that humans are motivated to resolve the discomfort surrounding their inevitable death, has been discussed in the psychology literature as an underlying basis of human decision-making and behavior. This paper explores how Terror Management Theory could be extended to seriously ill populations and applied to their healthcare decision-making processes and quality of care received.

Patient, caregiver, and oncologist predictions of quality of life in advanced cancer: Accuracy and associations with end-of-life care and caregiver bereavement.

BACKGROUND: Informed treatment decision-making necessitates accurate prognostication, including predictions about quality of life. AIMS: We examined whether oncologists, patients with advanced cancer, and caregivers accurately predict patients' future quality of life and whether these predictions are prospectively associated with end-of-life care and bereavement. MATERIALS & METHODS: We conducted secondary analyses of clinical trial data. Patients with advanced cancer (n = 156), caregivers (n = 156), and oncologists (n = 38) predicted patient quality of life 3 months into the future. Patients subsequently rated their quality of life 3 months later. Medical record data documented chemotherapy and emergency department (ED)/inpatient visits in the 30 days before death (n = 79 decedents). Caregivers self-reported on depression, anxiety, grief, purpose, and regret 7-months post-mortem. In mixed-effects models, patient, caregiver, and oncologist quality-of-life predictions at study entry were used to predict end-of-life care and caregiver outcomes, controlling for patients' quality of life at 3-month follow-up, demographic and clinical characteristics, and nesting within oncologists. RESULTS: Caregivers (P < 0.0001) and oncologists (P = 0.001) predicted lower quality of life than what patients actually experienced. Among decedents, 24.0% received chemotherapy and 54.5% had an ED/inpatient visit. When caregivers' predictions were more negative, patients were less likely to receive chemotherapy (P = 0.028) or have an ED/inpatient visit (P = 0.033), and caregivers reported worse depression (P = 0.002), anxiety (P = 0.019), and grief (P = 0.028) and less purpose in life (P < 0.001) 7-months post-mortem. CONCLUSION: When caregivers have more negative expectations about patients' quality of life, patients receive less intensive end-of-life care, and caregivers report worse bereavement outcomes.

Fear of Palliative Care: Roles of Age and Depression Severity.

Background: Palliative care is underutilized due in part to fear and misunderstanding, and depression might explain variation in fear of palliative care. Objective: Informed by the socioemotional selectivity theory, we hypothesized that older adults with cancer would be less depressed than younger adults, and subsequently less fearful of utilizing palliative care. Setting/Subjects: Patients predominately located in the United States with heterogeneous cancer diagnoses (n = 1095) completed the Patient-Reported Outcomes Information System (PROMIS) Depression scale and rated their fear of palliative care using the Palliative Care Attitudes Scale (PCAS). We examined the hypothesized intercorrelations, followed by a bootstrapped analysis of indirect effects in the PROCESS macro for SPSS. Results: Participants ranged from 26 to 93 years old (mean [M] = 60.40, standard deviation = 11.45). The most common diagnoses were prostate (34.1%), breast (23.3%), colorectal (17.5%), skin (15.3%), and lung (13.5%) cancer. As hypothesized, older participants had lower depression severity (r = -0.20, p < 0.001) and were less fearful of palliative care (r = -0.11, p < 0.001). Participants who were more depressed were more fearful of palliative care (r = 0.21, p < 0.001). An indirect effect (ß = -0.04, standard error = .01, 95% confidence interval: -0.06 to -0.02) suggested that depression severity may account for up to 40% of age-associated differences in fear of palliative care. Conclusions: Findings indicate that older adults with cancer are more likely to favor palliative care, with depression symptom severity accounting for age-related differences. Targeted interventions among younger patients with depressive symptoms may be helpful to reduce fear and misunderstanding and increase utilization of palliative care.

Anxiety, depression, and end-of-life care utilization in adults with metastatic cancer.

OBJECTIVE: End-of-life care for patients with cancer is often overly burdensome, and palliative and hospice care are underutilized. The objective of this study was to evaluate whether the mental health diagnoses of anxiety and depression were associated with variation in end-of-life care in metastatic cancer. METHODS: This study used electronic health data from 1,333 adults with metastatic cancer who received care at two academic health centers in Louisiana, USA, and died between 1/1/2011-12/31/2017. The study used descriptive statistics to characterize the sample and logistic regression to examine whether anxiety and depression diagnoses in the six months before death were associated with utilization outcomes (chemotherapy, intensive care unit [ICU] visits, emergency department visits, mechanical ventilation, inpatient hospitalization, palliative care encounters, and hospice utilization), while controlling for key demographic and health covariates. RESULTS: Patients (56.1% male; 65.6% White, 31.1% Black) commonly experienced depression (23.9%) and anxiety (27.2%) disorders within six months of death. Anxiety was associated with an increased likelihood of chemotherapy (odds ratio [OR] = 1.42, p = 0.016), ICU visits (OR = 1.40, p = 0.013), and inpatient hospitalizations (OR = 1.85, p < 0.001) in the 30 days before death. Anxiety (OR = 1.95, p < 0.001) and depression (OR = 1.34, p = 0.038) were associated with a greater likelihood of a palliative encounter. CONCLUSIONS: Patients with metastatic cancer who had an anxiety disorder were more likely to have burdensome end-of-life care, including chemotherapy, ICU visits, and inpatient hospitalizations in the 30 days before death. Depression and anxiety both increased the odds of palliative encounters. These results emphasize the importance of mental health considerations in end-of-life care.

Increasing Readiness for Early Integrated Palliative Oncology Care: Development and Initial Evaluation of the EMPOWER 2 Intervention.

CONTEXT: Early integrated palliative care improves quality of life, but palliative care programs are underutilized. Psychoeducational interventions explaining palliative care may increase patients' readiness for palliative care. OBJECTIVES: To 1) collaborate with stakeholders to develop the EMPOWER 2 intervention explaining palliative care, 2) examine acceptability, 3) evaluate feasibility and preliminary efficacy. METHODS: The research was conducted at a North American cancer center and involved 21 stakeholders and 10 patient-participants. Investigators and stakeholders iteratively developed the intervention. Stakeholders rated acceptability of the final intervention. Investigators implemented a pre-post trial to examine the feasibility of recruiting 10 patients with metastatic cancer within one month and with a ≥50% consent rate. Preliminary efficacy outcomes were changes in palliative care knowledge and attitudes. RESULTS: Using feedback from four stakeholder meetings, we developed a multimedia intervention tailored to three levels of health-literacy. The intervention provides knowledge and reassurance about the purpose and nature of palliative care, addressing cognitive and emotional barriers to utilization. Stakeholders rated the intervention and design process highly acceptable (3.78/4.00). The pilot met a priori feasibility criteria (10 patients enrolled in 14 days; 83.3% consent rate). The intervention increased palliative care knowledge by 83.1% and improved attitudes by 18.9 points on a 0 to 51 scale (Ps < 0.00001). CONCLUSIONS: This formative research outlines the development of a psychoeducational intervention about palliative care. The intervention is acceptable, feasible, and demonstrated promising pilot test results. This study will guide clinical teams in improving patients' readiness for palliative care and inform the forthcoming EMPOWER 3 randomized clinical trial.